This series takes a detailed look at the domains of the Decision Support Tool. This week we examine the second three descriptors in the Drug Therapies & Medications: Symptom Control domain, to help you assess your or your relative’s “level of need” in this important domain.

Catch up on parts one to seventeen below!

Get Help Breaking Down The Decision Support Tool: An Overview

Get Help Breaking Down the Decision Support Tool: Breathing Part 1

Get Help Breaking Down the Decision Support Tool: Breathing Part 2

Get Help Breaking Down the Decision Support Tool: Nutrition Part 1

Get Help Breaking Down the Decision Support Tool: Nutrition Part 2

Get Help Breaking Down the Decision Support Tool: Continence

Get Help Breaking Down the Decision Support Tool: Skin (including tissue viability), Part 1

Get Help Breaking Down the Decision Support Tool: Skin (including tissue viability), Part 2

Get Help Breaking Down the Decision Support Tool: Mobility, Part 1

Get Help Breaking Down the Decision Support Tool: Mobility, Part 2

Get Help Breaking Down the Decision Support Tool: Communication

Get Help Breaking Down the Decision Support Tool: Psychological & Emotional Needs

Get Help Breaking Down the Decision Support Tool: Cognition, Part 1

Get Help Breaking Down the Decision Support Tool: Cognition, Part 2

Get Help Breaking Down the Decision Support Tool: Behaviour, Part 1

Get Help Breaking Down the Decision Support Tool: Behaviour, Part 2

Get Help Breaking Down the Decision Support Tool: Drug Therapies & Medications: Symptom Control, Part 2

Recently, we looked at the first three descriptors in the Drug Therapies & Medications: Symptom Control domain – ‘No Needs’, ‘Low’ and ‘Moderate’ needs. This week we’ll examine the descriptors for ‘High’, ‘Severe’ and ‘Priority’ needs in this important domain.

The following clinical factors are relevant to the assessment of ‘High’, ‘Severe’ or ‘Priority’ needs in this domain:

• What symptoms need to be controlled?
• What medications are prescribed?
• Is any clinical judgment required in deciding to administer medications?
• Are any as-required (PRN) medications required?
• Are the medications effective in controlling symptoms?
• Does the person experience pain? How severe?
• Does pain impact on the delivery of care?
• Can pain be controlled?
• Are any specialists involved in prescribing and overseeing the medication regime?
• Is the person compliant with their medication regime?
• If not, is there a risk of relapse or serious injury if the medication is missed?

Now we’ve outlined the type of things the Multi-Disciplinary Team (MDT) will be considering in this domain, let’s take a look at the descriptors for the ‘High, ‘Severe’ and ‘Priority’ levels of need. For each level of need, we provide a case study to give you a better understanding of how the descriptors might be applied at your or your relative’s assessment.

IMPORTANT –This domain is often referred to simply as “medications”. This misses the most important aspect to consider when assessing needs in this domain: symptom control. Needs in this domain are determined by the type of mediations required to manage symptoms, the route of administration and the effectiveness of symptom management. Symptoms that are well-controlled with medication (i.e., non-problematic to manage) will not exceed the “High” level of need.

HIGH

CASE STUDY – HIGH

Medications MAR Chart

Aspirin 75mg one to be taken each day after food

Lansoprazole 15mg one to be taken in the morning

Morphine sulphate 10mg/5mg PRN 2.5mls up to 4 times a day

Paracetamol 1 tablet 4 x day. 1 paracetamol to be taken at each visit

Macrogol oral powder- one sachet three times a day.

Calcichew d3 forte one to be taken daily

Donepezil 10mg take one each morning

Docusate sodium 100mg one tablet twice per day

Ibandronic acid 150mg 5^th of every month 1 tablet 1 hour before food.

Mrs. X is prescribed a variety of medications, which are administered to her by the registered nurse.

The home reports Mrs. X is compliant with medications, although she requires assistance to take them. She is able to place the medications in her mouth once they are in her hand; staff assist her with a drink.

Mrs. X is prescribed PRN Oramorph which the nurse administers as required. A total of 23 doses of Oramorph were administered in the last month as per her medication charts. Mrs. X has long-standing back pain and takes regular paracetamol: it appears she only has a 500mg dose four times a day; the reasons for this are unclear. She was previously prescribed codeine but this was stopped due to constipation. Mrs X also uses a hot water bottle to help her back pain. There is evidence that when Oramorph was given regularly, this caused Mrs X to feel unwell; it was reviewed, therefore, and is now only to be given as required. This regime appears to be effective in controlling pain symptoms without adverse side effects.

Mrs. X presents with a ‘HIGH’ level of need as she requires administration and monitoring of medication regime by a registered nurse, carer or care worker specifically trained for the task because there are risks associated with the potential fluctuation of the medical condition or mental state, or risks regarding the effectiveness of the medication or the potential nature or severity of side-effects. However, with such monitoring the condition is usually non-problematic to manage.

OR

Moderate pain or other symptoms which is/are having a significant effect on other domains or on the provision of care.

SEVERE

CASE STUDY – SEVERE

Mrs X has a diagnosis of Parkinson’s disease and remains under the care of the Neurologist. There are significant difficulties in balancing her physical and psychological symptoms. She is reliant on carers for the administration of her medication regime, in accordance with the Neurologist’s instructions. Mrs X is fully compliant and is aware of when she requires additional Madopar. Mrs X is able to indicate pain and discomfort and request appropriate medication for symptom relief.

Mrs X has a number of medical conditions that require oversight:

• Parkinson’s disease and secondary to this experiences stiffness, and wearing off of her anti-Parkinson’s medication resulting in “freezing”. Additionally, Mrs X experiences hallucinations, Paranoia and anxiety. She is prescribed PRN Lorazepam to reduce these symptoms
• Postural Hypotension treated with Fludrocortisone
• History of Pulmonary Embolism and DVT requiring Warfarin and INR monitoring

Following an increase in symptoms, the nursing home has recently discontinued its usual care plans for Mrs. X, owing to the “rapid changes” in her condition. It has now implemented a holistic plan to be reviewed on a monthly basis.

Routine Madopar was discontinued on the advice of the Parkinson’s Nurse Specialist in early-May, as it was believed to be worsening symptoms of hallucinations and distress; Madopar continued to be prescribed PRN. Initially, an improvement in Mrs. X’s psychological state was noted. However, she had been urgently referred to the Specialist Parkinson’s Consultant, as she was once again suffering “severe hallucinations”.  The Consultant described being between a “rock and a hard place” in terms of trying to balance Mrs. X’s psychological and physical needs. Mrs. X’s condition remains problematic to manage.

Mrs. X presents with a ‘SEVERE’ level of need as she requires administration and monitoring of medication regime by a registered nurse, carer or care worker specifically trained for this task because there are risks associated with the potential fluctuation of the medical condition or mental state, or risks regarding the effectiveness of the medication or the potential nature or severity of side-effects. Even with such monitoring the condition is usually problematic to manage.

PRIORITY

CASE STUDY – PRIORITY

Mr. X suffers severe, chronic pain in the left side of his head and body following a CVA. He is rarely, if ever, pain free and his symptoms are having a severe impact on his health and wellbeing. He is unable to sleep for any length of time and has lost 2 stones in weight as the pain affects his appetite and ability to chew his food. He is now taking a liquid diet but remains nutritionally at risk.

Mr. X is under the care of the Pain Clinic and has trailed a number of neuropathic analgesics, as well as PRN opioids for breakthrough pain. Unfortunately, none of these have been effective and he remains in severe, unrelenting pain.

Mr. X will be seen again by the Pain Consultant and further changes to his medication regime are expected. In the meantime, staff try to comfort and distract Mr. X, although this is of very limited benefit.

Mr. X presents with a ‘PRIORITY’ level of need as he experiences unremitting and overwhelming pain despite all efforts to control pain effectively.

We hope this has helped you to understand the last three descriptors in the Drug Therapies & Medications: Symptom Control domain. Don’t miss the next part of this series, Altered States of Consciousness, coming very soon!

If you need help assessing your relative’s level of need in any domain on the DST, don’t hesitate to contact one of our specialist Advice Lines to discuss your case today. If you need expert advocacy support with any stage of your assessment or appeal, visit our 1-2-1 support page.

If there is a particular topic you would like us to cover, we’d love to hear from you! Just send an email via our “Contact Us” page with the subject “blog request” and we’ll do our best to cover your suggested topic.

Don’t forget to take a look at our informative guide book How to Get the NHS to Pay for Care which is available as an email PDF or in paperback.

This series takes a detailed look at the domains of the Decision Support Tool. This week we examine the first three descriptors in the Behaviour domain, to help you assess your or your relative’s “level of need” in this important domain.

Catch up on parts one to Fifteen below!

Get Help Breaking Down The Decision Support Tool: An Overview

Get Help Breaking Down the Decision Support Tool: Breathing Part 1

Get Help Breaking Down the Decision Support Tool: Breathing Part 2

Get Help Breaking Down the Decision Support Tool: Nutrition Part 1

Get Help Breaking Down the Decision Support Tool: Nutrition Part 2

Get Help Breaking Down the Decision Support Tool: Continence

Get Help Breaking Down the Decision Support Tool: Skin (including tissue viability), Part 1

Get Help Breaking Down the Decision Support Tool: Skin (including tissue viability), Part 2

Get Help Breaking Down the Decision Support Tool: Mobility, Part 1

Get Help Breaking Down the Decision Support Tool: Mobility, Part 2

Get Help Breaking Down the Decision Support Tool: Communication

Get Help Breaking Down the Decision Support Tool: Psychological & Emotional Needs

Get Help Breaking Down the Decision Support Tool: Cognition, Part 1

Get Help Breaking Down the Decision Support Tool: Cognition, Part 2

Get Help Breaking Down the Decision Support Tool: Behaviour, Part 1

Last week we looked at the first three descriptors in the Behaviour domain – ‘No Needs’, ‘Low’ and ‘Moderate’ needs. This week we’ll examine the descriptors for ‘High’, ‘Severe’ and ‘Priority’ needs in this important domain.

The following clinical factors are relevant to the assessment of ‘High’, ‘Severe’ or ‘Priority’ needs in this domain:

• What is the degree of risk posed by the behaviours and/or non-compliance?
• Is there a risk of serious illness, injury and/or death?
• Has anyone been injured? Did they require hospital treatment?
• How many staff are required to deliver care safely?
• What management techniques are employed and do these require specialist training (e.g., MAPA, as required sedation, restraint)?
• Are the management techniques effective in reducing the risks?
• Is the person independently mobile?
• Do they require 1:1 supervision (i.e., a dedicated staff member)? For how many hours a day?
• Is there ongoing oversight from the mental health team?
• Does the person require a specialized environment (e.g., EMI nursing, NHS facility, male only unit)?
• Is the person subject to Section under the Mental Health Act?
• Has the Safeguarding Team been involved?
• Have the police been involved?

*REMEMBER – Much of the assessment of needs in this domain relates to the degree of risk to the individual, their peers and/or those caring for them. Non-compliance with necessary care will pose a lesser or greater risk, depending on the assessed needs in other domains. For example, non-compliance with pressure area care would pose a far greater risk to a person with an existing pressure injury than a person whose skin is intact.

Now we’ve outlined the type of things the Multi-Disciplinary Team (MDT) will be considering in this domain, let’s take a look at the descriptors for the ‘High, ‘Severe’ and ‘Priority’ levels of need. For each level of need, we provide a case study to give you a better understanding of how the descriptors might be applied at your or your relative’s assessment.

HIGH

CASE STUDY – HIGH

Mrs. X is non-complaint with catheter care, personal cares and may be resistant towards some staff. Staff report that the ‘leave and return’ approach is employed with good effect. Mrs. X is reported to be restless and wander most of the day; she is at a high risk of falls.

Staff report that Mrs. X is frequently resistant to care and can be challenging to manage; she requires a skilled approach, which is usually effective.

Mrs. X thinks the lounge is her lounge at home and may become argumentative when other residents are in there. However, staff report she is easily diverted and not usually problematic to manage.

Mrs. X’s behaviours are a risk factor for falls; however, there is no further allusion to this in the mobility care plans. The care plan confirms Mrs. X has difficulty following instructions and can be non-compliant with care interventions. She can be quite sharp with staff when she doesn’t get the answers she is looking for. Staff report that she responds best in a quiet and calm environment.

Mrs. X is very reluctant at times to have a wash and can get quite angry with staff; if this occurs, the care plan outlines that it is best to leave her a little while and try again.

Mrs. X requires lots of prompts and reassurance to agree to necessary care interventions, some of which are critical (e.g., compliance with medication and catheterisation). While staff can predict when Mrs. X is most likely to present with challenging behaviour, it is still difficult to manage without the sensitive approach from familiar carers.

Mrs. X presents with a ‘HIGH’ level of need as she displays ‘challenging’ behaviour of type and/or frequency that poses a predictable risk to self, others or property. The risk assessment indicates that planned interventions are effective in minimising but not always eliminating risks. Compliance is variable but usually responsive to planned interventions’.

SEVERE

CASE STUDY – SEVERE

Mr. X presents with unpredictable challenging behaviour and is physically aggressive. He can display self-injurious behaviour by banging his head against the walls and can present as sexually disinhibited; he will also urinate in communal areas. He can cause property damage by punching and kicking windows and is at risk of falls due to his wandering/restless behaviour.

Mr. X’s wife reported that he was very aggressive to her whilst he was living at home, causing bruising, and necessitating a safeguarding referral and strategy meeting.

A Mental Heath Act assessment was undertaken in June/July due to his mental health/behavioural presentation which ultimately led to the breakdown in his home placement. The first care home placement served notice after three months, as it was unable to manage his behavioural needs, and his wife recalls that it took a long time to find an alternative placement.

The home manager reports that commencement of antipsychotic medication appears to have had a positive effect on Mr. X’s behavioural presentation, and that he appears much more settled since his admission to the home, which is registered to provide EMI nursing care. However, staff report that he ‘still has his moments’.

The behaviour support plan states that Mr. X can become verbally and physically aggressive, particularly during personal cares. He requires 1:1 supervision 24hrs a day. Antecedents to challenging behaviour include, others invading his personal space and being unable to communicate effectively.

Mr. X will become restless and pace up and down. He can become both verbally and physically aggressive towards staff during personal cares by swearing and hitting out. Strategies include, using reassurance and a calm approach. Mr. X needs basic step-by-step instructions on all care actions; he needs time and space to calm down. He sometimes responds to distraction, e.g., putting on the TV, offering him a drink or taking him to a quiet room.

Mr. X continues to require 24-hour 1:1 support and, occasionally, up to 3:1 support during personal cares to which he is resistive to on a daily basis. MAPA hold techniques have been used to escort Mr X away from other residents when he becomes agitated; this requires specialist training.

Mr. X presents with a ‘SEVERE’ level of need as he displays ‘challenging’ behaviour of severity and/or frequency that poses a significant risk to self, others or property. The risk assessment identifies that the behaviour(s) require(s) a prompt and skilled response that might be outside the range of planned interventions.

PRIORITY

CASE STUDY – PRIORITY

We have no case study for a priority level of need in this domain, as it is exceedingly rare. The risks associated with this level of need are so high, the individual would usually require detention in a secure facility, meaning their care would already be NHS-funded. We would not expect to see a person discharged into the community if they were still presenting with a Priority level of need.

The vast majority of people presenting with behaviours at this level will be having some sort of mental health or behavioural crisis, meaning it would not be appropriate to assess their eligibility for CHC funding (because this can only be considered once the person is at their clinical optimum). We would expect to see such an individual treated in an NHS facility, and for there to be a considerable improvement in their behaviour before any consideration for CHC funding is undertaken.

We hope this has helped you to understand the last three descriptors in the Behaviour domain.  Don’t miss the next part of this series, Drug Therapies & Medications: Symptom Control, coming very soon!

If you need help assessing your relative’s level of need in any domain on the DST, don’t hesitate to contact one of our specialist Advice Lines to discuss your case today. If you need expert advocacy support with any stage of your assessment or appeal, visit our 1-2-1 support page.

Don’t forget to take a look at our informative guide book How to Get the NHS to Pay for Care which is available as an email PDF or in paperback.

If there is a particular topic you would like us to cover, we’d love to hear from you! Just send an email via our “Contact Us” page with the subject “blog request” and we’ll do our best to cover your suggested topic.

This series takes a detailed look at the domains of the Decision Support Tool. This week we examine the second three descriptors in the Cognition domain, to help you assess your or your relative’s “level of need” in this important domain.

Don’t miss parts one to thirteen of this series!

Get Help Breaking Down The Decision Support Tool: An Overview

Get Help Breaking Down the Decision Support Tool: Breathing Part 1

Get Help Breaking Down the Decision Support Tool: Breathing Part 2

Get Help Breaking Down the Decision Support Tool: Nutrition Part 1

Get Help Breaking Down the Decision Support Tool: Nutrition Part 2

Get Help Breaking Down the Decision Support Tool: Continence

Get Help Breaking Down the Decision Support Tool: Skin (including tissue viability), Part 1

Get Help Breaking Down the Decision Support Tool: Skin (including tissue viability), Part 2

Get Help Breaking Down the Decision Support Tool: Mobility, Part 1

Get Help Breaking Down the Decision Support Tool: Mobility, Part 2

Get Help Breaking Down the Decision Support Tool: Communication

Get Help Breaking Down the Decision Support Tool: Psychological & Emotional Needs

Get Help Breaking Down the Decision Support Tool: Cognition, Part 1

Last week we looked at the Cognition domain in Part 1, and the first two descriptors – ‘No Needs’ and ‘Low’ needs. Catch up with Cognition, Part 1 if you missed it!

In Part 2, we’ll examine the descriptors for ‘Moderate’, ‘High’ and ‘Severe’ needs in this important domain.

The following clinical factors are relevant to the assessment of needs in this domain:

• Does the person experience short-term memory issues?
• Do they experience long-term memory issues?
• Do they know where they are (orientated to place)?
• Do they know what day and time it is (orientated to time)?
• Do they suffer day-night reversal (sleeping in the day, awake at night)?
• Do they know who the people around them are (orientated to person)?
• Do they recognise their family members (orientated to person)?
• Are they aware of risks in their environment?
• Are they aware of their own limitations and need for assistance?
• Are they able to use the call bell or otherwise summon assistance?
• Are they able to express their needs and wishes?
• Are they able to follow instructions (e.g., personal care)?
• What is their score on the Mini Mental State Examination (MMSE)?

*REMEMBER – A great many people who require 24-hour care in a residential or nursing home are living with some type of dementia or cognitive impairment. The majority of individuals we assess for CHC funding meet the descriptor for ‘High’ or ‘Severe’ needs in the Cognition domain, requiring full assistance to meet their Activities of Daily Living and maintain a safe environment. Unless there are significant additional factors which increase the time and/or skill required to meet those needs – e.g., challenging behaviours, swallowing difficulties, pressure sores, pain – this does not amount to a primary need for healthcare. Eligibility for CHC funding is defined by the quality and quantity of care interventions required to meet the assessed needs, not by any one diagnosis or condition.

Now that we’ve outlined the type of things the Multi-Disciplinary Team (MDT) will be considering in this domain, let’s take a look at the descriptors for the ‘Moderate’, ‘High’ and ‘Severe’ levels of need. For each level of need, we provide a case study to give you a better understanding of how the descriptors might be applied at your or your relative’s assessment.

MODERATE

CASE STUDY – MODERATE

Mrs. X has a diagnosis of dementia; her cognitive ability appears to be variable. There has been no formal capacity assessment since admission to the care home. The care home staff were unable to confirm if a DOLS application has been made. Her daughter is currently going through the application process for Lasting Power of Attorney.

The care home staff and family agree that Mrs. X is able to make basic decisions and at times some bigger decisions, but she would tend to discuss bigger decisions with her daughter. Her daughter reports that her decisions and conversations are rational. Mrs. X’s family have given examples that her short-term memory can be poor – she is unable to recall what she has eaten for lunch shortly after she has eaten – but is aware she has eaten.

Mrs. X can be repetitive in conversation and has got family mixed up, thinking her grandson was her son. She recognises her family but not individual care staff; we did discuss how the impact of staff wearing masks can affect this.

Mrs. X is not aware of the detail of where she is but is aware she is not at home and not in hospital; her daughter has explained to her that she is not unwell enough to be in hospital but not well enough to be at home and feels she understands this.

Mrs. X has some basic risk awareness; staff report she would test the temperature of a hot drink before consuming it but at times she will attempt to mobilise without her Zimmer frame placing her at high risk of recurring falls.

Mrs. X presents with a ‘MODERATE’ level of need as she has cognitive impairment (which may include some memory issues) that requires some supervision, prompting and/or assistance with basic care needs and daily living activities. Some awareness of needs and basic risks is evident. She is usually able to make choices appropriate to needs with assistance. However, she has limited ability even with supervision, prompting or assistance to make decisions about some aspects of her life, which consequently puts them at some risk of harm, neglect or health deterioration.

HIGH

CASE STUDY – HIGH

Mr. X has a diagnosis of Parkinson’s disease and is currently awaiting investigations regarding the possibility of Lewy Body dementia. He is noted to have impaired insight into his care needs and is disoriented to time and date, but retains orientation to place and person most of the time. He is usually able to recognise familiar carers, family and friends and can make some simple day-to-day decisions about care needs and preferences. However, he does experience episodes of confusion and disorientation. During these episodes, he lacks insight into needs and cannot communicate needs or preferences to staff – necessitating that they deliver care in his best interest to ensure his needs are met. It is difficult to ascertain any particular pattern to episodes of confusion with him previously being documented to be more confused in the evening, but in the daily records appearing to be more confused first thing in the morning.

Mr. X also exhibits impaired risk awareness resulting in him getting up and mobilising independently without assistance from staff despite being at high risk of falls. He lacks insight into his limitation in the context of his mobility and staff are documented to ensure that his walking frame is left out of his sight when he is unattended for any period of time in order to reduce the risk of him attempting to get up.

Mr. X does appear to retain some awareness of needs and is able to make some simple decisions about choices and preferences. Similarly, his impaired risk awareness appears to be episodic rather than a persistent state.

Mr. X presents with a ‘HIGH’ level of need as he experiences frequent short-term memory issues and maybe disorientation to time and place. He has awareness of only a limited range of needs and basic risks. Although he may be able to make some choices appropriate to need on a limited range of issues, he is unable to consistently do so on most issues, even with supervision, prompting or assistance. He finds it difficult even with supervision, prompting or assistance to make decisions about key aspects of his life, which consequently puts him at high risk of harm, neglect or health deterioration.

SEVERE

Mrs X has a diagnosis of vascular dementia and has significant cognitive impairment as a result. She is disorientated to time place and person and is completely unaware of her care needs. She scored 6/30 on a recent Mini Mental State Exam (MMSE). She appears to have no recognition of staff or family members.

Mrs. X’s short- and long-term memory is impaired and she has no insight into her needs and limitations. She is completely dependent on staff to anticipate all her needs for her and to deliver necessary care in her best interests.

Mrs. X has no awareness of even basic risks and is dependent on staff to identify and mitigate risks in her best interest, and to maintain a safe environment.

Mrs. X presents with a ‘SEVERE’ level of need as she has cognitive impairment that may, for example, include, marked short or long-term memory issues, or severe disorientation to time, place or person. She is unable to assess basic risks even with supervision, prompting or assistance, and is dependent on others to anticipate her basic needs and to protect her from harm, neglect or health deterioration.

For further reading around the subject look at this selection of blogs from our Care To Be Different website:

My Dad Has Dementia – So Will He Automatically Qualify For CHC Funding?

Essential: Have You Got A Power Of Attorney

Do you need legal capacity to assist your relative’s claim for NHS funding? Arguing “BEST INTERESTS”.

Tackling consent: Keeping control if your relative lacks mental capacity.

Denied access because you don’t have the necessary legal authority to act for your relative?

We hope this has helped you to understand the descriptors in the Cognition domain.  Don’t miss the next part of this series, Behaviour, coming very soon!

If you need help assessing your relative’s level of need in any domain on the DST, don’t hesitate to get in touch or contact one of our specialist Advice Lines to discuss your case today. If you need expert advocacy support with any stage of your assessment or appeal, visit our 1-2-1 support page.

Don’t forget to take a look at our informative guide book How to Get the NHS to Pay for Care which is available as an email PDF or in paperback.

If there is a particular topic you would like us to cover, we’d love to hear from you! Just send an email via our “Contact Us” page with the subject “blog request” and we’ll do our best to cover your suggested topic.

There are 12 areas of care need that are considered by an NHS Clinical Commissioning Group when assessing eligibility for NHS Continuing Healthcare Funding. These 12 areas of need are set out in the Decision Support Tool (DST) and referred to as ‘care domains’:

1. Breathing
2. Nutrition
3. Continence
4. Skin (including tissue viability)
5. Mobility
6. Communication
7. Psychological and Emotional Needs
8. Cognition
9. Behaviour
10. Drug Therapies and Medication
11. Altered States of Consciousness
12. Other significant care needs

This article focuses on the sixth care domain – Communication. The DST notes that this domain relates to “difficulties with expression and understanding, in particular with regard to communicating needs. An individual’s ability, or otherwise, to communicate their needs may well have an impact both on the overall assessment and on the provision of care. Consideration should always be given to whether the individual requires assistance with communication, for example through an interpreter, use of pictures, sign language, use of Braille, hearing aids, or other communication technology.”

When considering Communication, there are 4 possible levels of need which could be selected – ‘No Needs’, ‘Low’, ‘Moderate’ and ‘High’.

They are defined in the DST as follows:

Some of the care domains on the DST have a ‘Severe’ or ‘Priority’ level of need attached to them. This is not the case in Communication.  The highest level in communication is ‘High’.

As would be expected, if a person can communicate without any difficulty, this will be determined as having ‘No Needs’.

A level of ‘Low’ needs will arise if, for example, there is a sight or hearing impairment that is not possible to remedy with glasses or hearing aids. A low level could also be given at the start of dementia, where communication with the person might need to be repeated or explained, but they can still grasp what is being said and understand most aspects of their care. A low level may also be appropriate after stroke, where communication has been mildly affected, such as having slurred speech or word-finding difficulties. It could also cover other conditions where speech is slow, slurred or more difficult to interpret. Essentially, you can communicate with the person, but there is an additional amount of time needed to convey their needs.

A level of ‘Moderate’ needs will arise where the communication difficulties are more substantial than ‘Low’.  It could be that, through familiarity with the person, their communication can be better understood, but communication takes longer and is more difficult.  They might have nuances or patterns to their speech, which with some practice, carers can understand with close listening. The person might need extra time to make themselves understood. They might need picture cards or other communication aids to assist, such as assistive technology. But in general, they will be able to make themselves understood with the support of a familiar carer. They may need to rely upon gestures and expressions and the use of closed questions, (questions that require a ‘yes’ or ‘no’ answer) which could be conveyed using head movements if the person cannot communicate verbally.

A level of ‘High’ will arise once the need goes beyond ‘Moderate’.  This will include someone that has no verbal or non-verbal ability to communicate their needs at all. If a person can indicate pain by grimacing or wincing, it is sometimes noted by assessors that this is ‘non-verbal communication’. If this is the person’s only method of being able to communicate, the level of need should generally be recorded as ‘High’.

The difference between the levels of need is generally based on clinical opinion and recorded evidence. That is why good record keeping is essential.

Read our blogs on the importance of good record keeping:

Do Care Homes Play A Part In Preventing Successful Outcomes For CHC Funding?

Why is it important to check your relative’s care home records?

Problems with care home records? Mind your language…

Reliability of Communication

A key word used in the descriptions for ‘Moderate’ and ‘High’ is ‘reliability’.  In ‘Moderate’, reliability is described as having communication that is ‘sometimes’ unreliable, whereas ‘High’ describes a person who is ‘unable to reliably communicate at any time in any way’. There is a large gap between ‘sometimes’ and ‘at any time’.  A person may occasionally be unreliable, or always be unreliable, but they might fluctuate frequently so as to be unreliable more often than not, but not necessarily, always. If so, should they be categorised as ‘High’ or ‘Moderate’? Again, this is a question of fact and degree for clinicians, assessors and advocates to establish. The argument may be more productively considered in the four Key Characteristics (see below).

The question of reliability mainly arises with cognitive problems, for instance, a person living with dementia, brain injury, learning disability or after a stroke. These individuals may perhaps say ‘yes’ when they mean ‘no’. When given choices, they may select the last given option rather than making a reasoned choice. They might not understand communication at all. Here it will be a question of fact and degree, as well as considering the written evidence and verbal evidence of carers and family.

The DST assessor, advocate or other clinical staff determining the correct level of need, will need to look at any written evidence indicating the person’s ability to communicate. For example, care home records or GP records that indicate that the person can converse, read or write, answer questions or can indicate some or most of their care needs. Comments written in the care records such as ‘Mr X asked for a drink’, ‘Mrs Y asked to be taken to the toilet’, or ‘Ms Z said she had a headache’ can all be used in evidence to support the appropriate level of need. That is why the written records can be so important to supporting the level of need.

TIPS: Here are some examples of questions which might assist to determine reliability:

• Can the person correctly indicate pain, the level of pain and the site of the pain?
• Can the person correctly indicate whether they need assistance with a particular care need?
• Does the person have cognitive impairment, and if so, to what extent?

In some cases, if the person has been seen by a Speech and Language Therapist (SALT) or Occupational Therapist, it would be helpful to include any letters or reports from these specialists to evidence the needs.

TIPS: Here are some questions to note when thinking about the level of Communication on the DST;

• Can the person communicate their needs easily? What is the quality of their communication? Do people find them difficult to understand? Do carers need to anticipate some, or all of their needs, due to communication difficulties?
• Can they communicate verbally? Can they communicate non-verbally, for example using written word, picture cards, hand gestures, assisted technology etc?
• Is there a hearing or sight impairment? Is this resolved by glasses or hearing aids? Is there any difficulty getting the person to use their glasses or hearing aids? To what extent is their hearing or sight impaired? For example, are they profoundly deaf? Are they registered blind or partially sighted? Are one or both eyes/ears affected? What adjustments can be made/are being made to assist the person to communicate better?
• Does their ability to communicate fluctuate? It might be worse at certain times, for example when tired, when their cognition fluctuates (this is common in people with vascular dementia), during infections. If a person has a lot of time where their communication fluctuates, this should be recorded on the DST and the level of need selected should reflect the needs when they are at their greatest.
• Do they have a cognitive impairment? If so, how great is the cognitive impairment and how does it impact on communication?
• If the person has been assessed by Speech and Language Therapists, what was their view and advice? It is helpful to take a copy of the assessment along with you for reference in assessments and appeals.

Disagreements about the level of need

It can sometimes be tricky to select a level of need that appropriately reflects the person’s ability in Communication. This can lead to differences of opinion in assessors, clinicians, advocates and the family. Where a level of need is proving difficult to agree, it can be helpful to complete the rest of the DST and then return to Communication afterwards as discussions around the other areas of need can often resolve the issue.

Considering the needs in Cognition can often be helpful to decide whether the communication is reliable or not. Generally, if the need in Cognition is ‘Severe’, the need in Communication will be ‘High’, as communication is unlikely to be reliable with this level of cognitive impairment.

If the members of the Multi-Disciplinary Team (MDT) cannot agree the correct level of need and one member thinks, for example, it should be ‘High’ and the other thinks it should be ‘Moderate,’ the highest level should be selected. The reason for the disagreement should be recorded on the DST. If family or carers disagree with the level chosen, this too, should be recorded on the DST.

Considering Communication within the Four Key Characteristics

A good CHC assessment will consider the impact of each of the care domains on each other and how this relates to the four Key characteristics; Nature, Intensity, Complexity and Unpredictability.

Communication affects most of the other care domains and should be mentioned in those domains and/or reflected in the Four Key Characteristics. For example, being unable to communicate or having to rely on communication aids (such as a communication board) can be exhausting and frustrating for the patient and can result in distress. This should be reflected in the Psychological and Emotional Needs domain, and also in the Intensity and Complexity Key Characteristics.

It can also lead to challenging behaviour, for example physical aggression or resistance to care, if the person does not understand why care is being done and if they are unable to communicate this effectively. This should be considered in the Behaviour domain and also in Intensity and Complexity.

Similarly, if a person is known to experience pain but is no longer able to say they are in pain, this will impact on the Medication domain. Carers will need to be vigilant during care provision to watch out for clues such as facial expressions or listen out for sounds of pain. This can add on time to care and can also make it more difficult to assess whether a person needs more pain relief and whether the pain relief given has had good effect. This might add to the complexity of their care.

Other aspects of care that might be affected by communication difficulties are likely to include the other domains of Skin, Continence or Nutrition, where needs in these care domains should also be considered – particularly if the needs in these areas of care are selected as ‘High’.

For further reading around the subject look at these blogs and many more on our Care To Be Different website:

Need help getting copies of your relative’s care home records?

How much clinical evidence should MDT assessments consider?

June’s feature on flawed CHC assessments and the importance of good record keeping

Other blogs in our TIPs on DST series include:

TIPS on assessing ‘Behaviour’ in your Decision Support Tool

TIPS on assessing ‘Altered State of Consciousness’ in your Decision Support Tool

If you need help with an MDT assessment, appeal or advocacy support don’t hesitate to contact us or get help from one of our specialist Advice Lines to discuss your case today.

Plus, don’t forget, there is plenty of free information and resources to help you on our Care To Be Different website.

If there is a particular topic you would like us to cover, we’d love to hear from you! Just send an email via our “Contact Us” page with the subject “blog request” and we’ll do our best to cover your suggested topic.

Families often ask us about ‘well-managed needs’ or quote the ‘well-managed needs’ principle, with very little understanding as to how it might apply to their relative’s assessment for NHS Continuing Healthcare (CHC).

The concept of what is a ‘well-managed need’ is admittedly confusing due to a lack of clarity and guidance in the NHS National Framework. As such, its application is frequently misapplied by CHC assessors – leading to incorrect decision outcomes and families being wrongly refused essential free NHS healthcare for their relative’s needs and accommodation.

The guidance in the National Framework for NHS Continuing Healthcare and the Decision Support Tool and Practice Guidance sets out the following provisions about well-managed needs:

NHS National Framework:

“142. The decision-making rationale should not marginalise a need just because it is successfully managed: well-managed needs are still needs. Only where the successful management of a healthcare need has permanently reduced or removed an ongoing need, such that the active management of this need is reduced or no longer required, will this have a bearing on NHS Continuing Healthcare eligibility.

143. An example of the application of the well-managed needs principle might occur in the context of the behaviour domain where an individual’s support plan includes support/interventions to manage challenging behaviour, which is successful in that there are no recorded incidents which indicate a risk to themselves, others or property. In this situation, the individual may have needs that are well-managed, and if so, these should be recorded and taken into account in the eligibility decision.

144. In applying the principle of well-managed need, consideration should be given to the fact that specialist care providers may not routinely produce detailed recording of the extent to which a need is managed. It may be necessary to ask the provider to complete a detailed diary over a suitable period of time to demonstrate the nature and frequency of the needs and interventions, and their effectiveness.

145. Care should be taken when applying this principle. Sometimes needs may appear to be exacerbated because the individual is currently in an inappropriate environment rather than because they require a particular type or level of support – if they move to a different environment and their needs reduce this does not necessarily mean that the need is now ‘well-managed’, the need may actually be reduced or no longer exist.

146. It is not intended that this principle should be applied in such a way that well controlled conditions should be recorded as if medication or other routine care or support was not present (refer to Practice Guidance note 23 for how the well managed needs principle should be applied). The multi-disciplinary team should give due regard to well-controlled conditions when considering the four characteristics of need and making an eligibility recommendation on primary health need (refer to paragraph 59).”

The National Framework also provides a section entitled ‘Well-managed needs and reviews’ which provides:

“188. When undertaking NHS Continuing Healthcare reviews, care must be taken not to misinterpret a situation where the individual’s care needs are being well managed as being a reduction in their actual day-to-day care needs. This may be particularly relevant where the individual has a progressive illness or condition, although it is recognised that with some progressive conditions care needs can reduce over time.”

The Decision Support Tool also provides information about well-managed needs:

The DST provides at paragraph 27: “Needs should not be marginalised just because they are successfully managed. Well-managed needs are still needs. Only where the successful management of a healthcare need has permanently reduced or removed an on-going need, such that the active management of this need is reduced or no longer required will this have a bearing on NHS Continuing Healthcare eligibility. This principle is incorporated into the domain descriptors of the DST. For example, in the behaviour domain the level of support and skill required to manage risks associated with challenging behaviour helps determine the domain weighting. In such cases the care plan (including psychological or similar interventions) should provide the evidence of the level of need, recognising that this care plan may be successfully avoiding or reducing incidents of challenging behaviour (refer to paragraphs 142-146 of the National Framework and Practice Guidance note 23). For example, where psychological or similar interventions are successfully addressing behavioural issues, consideration should be given as to the present-day need if that support were withdrawn or no longer available and this should be reflected in the Behaviour domain.”

And at paragraph 28: “It is not intended that this principle should be applied in such a way that well-controlled health conditions should be recorded as if medication or other routine care or support was not present. For example, where needs are being managed via medication (whether for behaviour or for physical health needs), it may be more appropriate to reflect this in the Drug Therapies and Medication domain. Similarly, where an individual’s skin condition is not aggravated by their incontinence because they are receiving good continence care, it would not be appropriate to weight the skin domain as if the continence care was not being provided (refer to paragraphs 142-146 of the National Framework).”

The Practice Guidance provides:

PG 23 How should the well-managed need principle be applied?

“23.1 Care should be taken when applying the well-managed need principle. Sometimes needs may appear to be exacerbated because the individual is currently in an inappropriate environment rather than because they require a particular type or level of support – if they move to a different environment and their needs reduce this does not necessarily mean that the need is now ‘well-managed’, the need may actually be reduced or no longer exist. For example, in an acute hospital setting, an individual might feel disoriented or have difficulty sleeping and consequently exhibit more challenging behaviour, but as soon as they are in a care home environment, or their own home, their behaviour may improve without requiring any particular support around these issues.

23.2 Where needs are being managed via medication (whether for behaviour or for physical health needs), it may be more appropriate to reflect this in the Drug Therapies and Medication domain. Similarly, where an individual’s skin condition is not aggravated by their incontinence because they are receiving good continence care, it would not be appropriate to weight the Skin domain as if the continence care was not being provided.”

How does this work in Practice?

Perhaps an easier way of putting the ‘well-managed need’ principle is simply to say: what are the care actions that are being carried out on a day-to-day basis to provide the care and what training does the care provider need to properly carry out this care? The CHC assessor should ask pertinent questions to find out the answers.

The circumstances in which a need is being well-managed and the impact on the presentation of the individual will vary from patient to patient. Therefore, it is difficult to give hard and fast examples of the application of a well-managed need, or the questions necessary to identify the need and how it is being met. However, here are some examples which will help you:

1. Supposing a patient has recently moved from one setting to another, and as a result, their needs have changed. It could be that the previous setting was not meeting the care needs – causing other problems – which have now been resolved. In this event ask:

• What has changed?
• Who is now providing the care, and what is being done differently?
• What is being done now on a day-to-day basis to manage the needs, and what training is needed by carers?

Some/all needs created as a result of being in the wrong setting may have disappeared altogether, so it could be that those needs no longer exist. For example, a person with challenging behaviour around a member of the opposite sex could be moved to a single sex setting; in this case the problem has been resolved and no one is having to do anything now to meet that need; the need has disappeared.

2. Consider a patient who may not be coping alone in their own home because they forget to take their medication. This in turn could cause lots of problems that are resolved once the person is being properly supported with their medication being administered by a carer. In the case of the medication being forgotten, the person now needs support with taking their medication. The need is being managed. The fact that support is needed to take medication, should be measured in the DST. The assessor should ask questions such as:

• Is the medication being given covertly?
• Does the person refuse to take the medication?
• What medication is being administered, and does it need a level of skill to administer it?
• What monitoring is needed to ensure that the medication is effective?
• Are there any side effects?

3. Take a patient who is now in a new setting, and the setting is a specialist provision, where the input of the specialist care has made all the difference. In these instances, it is necessary to ask:

• What exactly is being done now to meet the care needs?
• Is the care that is now being undertaken being properly recorded?

It is the analysis of this care, and the training needed to do it, that is important. As specialist care providers will have specialist staff with specialist skills and knowledge that conduct the care, the type and amount of care that these specialist staff are providing needs to be measured/recorded on the DST. The assessor should consider the skill needed to provide the care and what techniques are being used etc.

4. What if a patient was having lots of epileptic seizures and these have now stopped due to being prescribed new medication? In this scenario, the CHC assessor should ask: what is the care that is now needed day-to-day? The care now prescribed might be: “To administer the anticonvulsant medication as prescribed by the GP/Specialist, and to monitor the patient for further seizures.” Before, the patient might have been having numerous fits and needed a lot of skilled management by carers, but are now seizure free. So, in this case, the needs are now well-managed and the need the being met by administering medication and monitoring – this need should be recorded on the DST.

A ‘well-managed’ need is still a need. This means that the care actions needed to meet the need should be recorded on the DST. So, in practice you should see written in the DST as follows: “Anticonvulsant medication needs to be prescribed by the GP/Specialist and carers need to administer the medication and monitor the patient for further seizures.” This, as long as it sufficiently describes the care now needed, will indicate that it has been properly measured within the assessment.

5. It could be that a patient was displaying lots of challenging behaviour and this has been well-managed with medication i.e. meaning that the challenging behaviour is no longer happening. In this event, the CHC assessor should ask:

• What medication is now being administered?
• Does it require a level of skill to administer it?
• Are there any side effects?’
• Is PRN (as required) medication prescribed? This is relevant as it involves additional monitoring to determine whether and when the medication should be administered, and monitoring for effectiveness and adverse side effects.

What if the patient was aggressive, and still is aggressive, but the need for care to prevent this aggression has become easier to manage e.g because they are no longer independently mobile (which stops them from being a high risk to themselves or others)? In this instance, the need has simply decreased due to other factors rather than being well-managed. This could result in the level of need in behaviour reducing.

In conclusion:

The ‘well-managed need’ concept is difficult to grasp for both NHS seasoned assessors and practitioners as well as families, and the questions to be answered will differ from case to case.

Just because there is a well-managed need, it does not follow that there is eligibility for CHC. However, the well-managed need should be identified, and the care required to meet that need should be recorded on the DST.

TIP: It is vital to ask the right questions to figure out what, if any, needs still exist, what training is needed to meet those needs, and whether there have been other changes that now need to be considered as a result of the former needs being met.

For further reading around the subject:

Using the ‘Well-Managed Need’ Principle To Your Advantage

Do you really understand the “Well-Managed Needs” argument? – 2018

Care is routine” – misleading NHS Continuing Healthcare information

If you need help with your relative’s CHC assessment, MDT or appeal, or just want to discuss your situation, visit our Contact Us page via our website, or book a slot with one of our specialist nurses or experienced case-managers.